Introduction

What is the
meaning of the word “impaired”? In the English language this word
has many connotations but the Merriam-Webster Dictionary defines the
word “impaired” as “being in a less than
perfect or whole condition: asa: disabled
or functionally defective —often used in combination <hearing-impaired>b: intoxicated
by alcohol or narcotics” (Merriam-Webster). The dictionary
states that impaired means less than perfect, but who defines the
word “perfect” and whose definition would be acceptable to everyone?
According to Dr. Stefans, “The World Health Organization defines
impaired as a physiologic change that adversely alters function. We
refer to the function that is impaired because the whole person is
not really impaired, just certain skills or abilities” (Stefans).

The treatment of
babies and children who are, by medical standards, impaired is seen
as an ethical issue by many people. This paper will focus on the
justifications for and against treating the impaired taking into
consideration the following; the history of treating babies and
children who were and are considered to be impaired, the pros of
beginning or continuing care of impaired babies and children, and
the cons of treating individuals considered impaired. Be they
medical professionals, family members, friends and educators or the
impaired themselves, everyone has a different opinion on the
implications and meaning of caring for and interacting with mentally
and/or physically impaired individuals.

History of Treating the Impaired

Throughout history, there have been many different periods of time
where the treatment of impaired babies was

either supported or frowned upon,
depending on the goals of the society in general. Way back to
before Christ, the

Hebrew
bible frowned upon the killing of infants. Constantinople and the
whole religion of Christianity ruled that the killing

of infants
was illegal and should not be done, but there was no other advice or
help available to assist in raising disabled or

impaired
children. The ancient Greeks and Romans said that the killing of
children would be better to help weed out the

unfit from
society and society would be better without them. “Plato wrote in
“The Republic,” that “life not worth living”

and noted
“he would not try . . . to prolong a miserable existence and helped
end the patient’s “useless” life and to also

stop the
spread of “bad” human traits” (Cheyfitz, 11). Also during this time,
letting impaired babies die was not considered

murder but
was just accepted as a way of life. Letting a child die was the
same as during Plato’s time that it was just the

way society
had to be.

The ancient Greek
healers suggested that the three goals of treatment were “cure,
relief of suffering, and the refusal to treat those “overmastered by
their illness” (Fine, 145). Hippocrates brought up many questions
in the minds’ of many doctors during this time. As people became
doctors, they were required to recite the
oath which in part stated,

(Pernick,
31)

“I will neither give a deadly drug to anyone if asked for it,

nor will I
make a suggestion to this effect” (Cheyfitz, 11).

This
pained doctors who then had to learn how to

prioritize
infants lives into who was worth living and not

worth
living and above all, who would decide who lived or

died?

By the 1900’s,
the choice dealt with the idea of eugenics vs. euthanasia. It was
thought upon at this time, that “eugenics was meant to be “better
off dead” vs.

(Pernick,
103)

euthanasia that
was meant to be “better not born” (Pernick, 15). In the United
States, the first case in recorded history occurred in 1915 when Dr.
Harry Haiselden refused to treat an infant with multiple
disabilities and convinced the parents to not perform a life-saving
operation. Doctor Haiselden secretly had been practicing
infanticide previously and came out in public stating his position
regarding the treatment of defective infants (Pernick, 4). Table 1
and Table 12 state how the public felt about treating impaired
babies and who should decide the fate of such individuals. After
this case was made public, the Chicago Daily Tribune came out, two
days in a row, headlining the case of the Bollinger baby,

(Pernick,
center photographs)

(Pernick,
center photographs)

even so much as
being displayed as headlines despite the fact that World War I was
currently going on. This case sparked an outcry although many other
doctors came out in public holding the same theory and practiced it
too.

During this time,
doctors would tell the families what they, the medical staff, were
going to do to help the child and would refuse to state the other
side of the coin. Many families were left to no other choice but to
let their child go. This case, among many others that were
announced during that time left a few questions that needed to be
solved before continuing on and helping doctors and families during
this time. Basically it brought up a few main issues that needed to
be dealt with, “Do parents have the right to refuse life-saving/life
sustaining therapies for their children? If parents refuse, is there
an obligation for anyone else to intervene, e.g. health care
professionals, the courts, the state, etc.? Who defines what is an
acceptable quality of life” (Bondeson).
For many years after the Bollinger baby, the case of eugenics was
silent until recent cases in the 1970’s and 1980’s brought the
subject of treating impaired babies back into the public life.

Arguments for Treatment of Impaired
Babies & Children

When looking at arguments for treating impaired babies and children,
one must first look at the past three decades to see where the
arguments stemmed from. Many lawyers first looked at 1973 Roe v.
Wade to decide first when a person has legal rights. “With respect
to the right to life, the word “person” as used in this article and
in the fifth and fourteenth articles of amendment to the
Constitution of the United States , applies to all human beings,
including their offspring at every stage of their development,
irrespective of age, health, function, or condition of dependency”
(Blank, 9).

The first two
cases are the Baby Doe Cases that occurred within a year of each
other. Both sets of parents

refused to have
surgery to correct genetic anomalies that would have saved their
children’s lives because of the

information
received from the doctors. In both cases, a third party
initiated proceedings to have the courts intervene on behalf of the
children in question. “The moral
complexities of Baby Doe have forced physicians to deliberate the
most responsible ways to implement new technologies” (Morrow,
1147). Doctors now had to try to figure out what was the best way
to treat the impaired infants and how to best explain it to the
parents. They could no longer pass judgment on the infants and only
explain one side of the story to the families. “The physician has
an obligation to inform the parents regarding the potential
consequences of their choice, but is generally not qualified to
overrule their assessment of the family’s interest” (Mercurio,
687). President Reagan stepped in and made reference to Section 504
of the Rehabilitation Act of 1973 reminding hospitals of their duty
to treat all children in order to make sure all babies received
treatment.

The law that
challenged most doctors and professionals was the 1984 Child Abuse
Amendments. The first two mandates of this law stated clearly that,
“All such disabled infants must under all circumstances receive
appropriate nutrition, hydration and medication. Second, all such
disabled infants must be given medically indicated treatment”
(Blank, 81). In reference to Baby K, an infant who was anencephalic,
"Absent of finding of neglect or abuse" parents have the right to
make decisions about medical treatment for their children and, when
parents disagree, the court should support the parent who decides in
favor of life" (Bondeson).
“This stemmed from the case when the doctors wanted to remove Baby
K’s from her ventilator and let her die but the family did not
agree” (Pence, 194).

Dr. John Bach,
leading researcher for the treatment of children and infants with
neuromuscular disorders,

(Bach, 353)

currently
teaches family members and other doctors about giving children a
fighting chance. Children with Spinal Muscular Atrophy (SMA)
typical do not survive past one year of age; Dr. Bach conducted a
study of parents of children with SMA to ascertain their child’s
quality of life. The results can be seen in Table 8.
He disagrees with the statement of most doctors in letting the child
go because there is an easy way to keep these children alive and to
fight for them because they do have a high quality of life.

Arguments against Treatment of Impaired Babies & Children

Looking back to
Dr. Haiselden and his supporters, many of today’s doctors feel the
same way about treating impaired babies. Refusing to treat impaired
babies was a “humanitarian effort to relieve the intense suffering
of afflicted individuals and a utilitarian attempt to protect
society against costly and menacing defectives” (Pernick, 89).
Doctors hold on to these theories because no one really knows how
disabled children feel so they often refuse to think about it and
just assume that the child has no chance for a meaningful life.
“Newborns, as with any never-competent patient, enjoy no such right.
Any protection from inhumane treatment must come from others; the
parents’ right to decide for their child should not be as absolute
as their right to choose for themselves” (Mercurio, 685).
Mercurio’s thoughts along with the thoughts of professionals believe
that a parent cannot know what their child would want so the doctor
would tend to override parental wishes. Doctors in Sweden “tend to
withhold treatment from the beginning from infants for whom
statistical data suggests a grim prognosis” (Rhoden, 34). Along with
Mercurio’s thoughts and the thoughts of Swedish doctors,
“Additionally, one might argue that the statistical approach ignores
the ability of ‘outliers’ to survive or the willingness of some
parents to cope with tragic circumstances” (Gross, 244).

One of today’s
leading supporters for infanticide is Peter Singer, a professor of
Bioethics at Princeton University. Peter Singer argues that parents
and physicians can justify infanticide on the basis of total
utility: “When the death of a disabled infant will lead to the birth
of another infant with better prospects of a happy life, the total
amount of happiness will be greater if the disabled infant is
killed. This argument relies on a “replaceability” thesis. It
stipulates that since newborns lack the rationality, autonomy, and
self-consciousness of persons, they can be selectively killed and
replaced with healthier ones in the same way that early prenatal
diagnosis affords selective abortion of severely deformed fetuses”
(Morrow, 1146). A
vast majority of doctors share a common belief, “We think of them as
only acting like they act in our office, think that parents are
making it up if they describe better function, have no idea how
people with disabilities do things and often share the lay public's
perceptions that any disability or impairment means reduced capacity
for success and happiness, thinking that specific things can't be
done because we don't [know] what the technologies and modifications
really are. We sit around thinking the wrong things in life are
important; we assume that someone who walks has to be happier than
someone who doesn't, that someone who does not need any equipment to
breathe is automatically happier than someone who does, and forget
that it is love and relationship that gives life meaning. We think
of the hospital and clinic as more than the tiny proportion of
life's total experience that it usually is” (Stefans).

Conclusion

Surprisingly, the
vast majority of data that was found about the treatment of impaired
babies seemed to be against the killing of them. The treatment of
babies and children who are, by medical standards, impaired is seen
as an ethical issue by many people. Medical professionals, family
members, friends and educators or the impaired themselves, have a
different opinion on the implications and meaning of caring for and
interacting with mentally and/or physically impaired individuals.
Gina Laurie is quoted in a book by Dr. John Bach as saying, “Beware
of underestimating the limitless potential of individuals with
disability. Independence for a ventilator user means that one can
say, “So I use a ventilator, I am in charge of it. I direct my own
life and take my own risks. I am the one who decides about my
quality of life”” (Bach, 347).

My Opinion

I
would consider myself extremely biased on the issue of treating the
impaired, infirm, invalid, diseased, handicapped or different;
whichever word one would prefer to use to describe people who seem
unlike others. Having a condition that limits my ability to
accomplish many tasks on my own has allowed me perspective which
many others, considered normal, may not have. In my experience the
treatment of impaired babies and children varies greatly from
hospital to hospital and diagnosis to diagnosis. According to many
medical professionals my diagnosis should have only “let” me live a
maximum of two years, and yet here I sit, five months into my
twenty-first year of life.

I
believe all people, be they two days or twenty-two years old,
deserve the chance at a future. I agree with Dr. Stefans when she
says,
“Disability is a normal part of human experience and people with
disabilities are more like than unlike everybody else. We as a
society need to UNlearn the idea that people with different
abilities "belong" in different places. I wish I could get the
bumper sticker again that says – ‘The ADA: To Boldly Go Where
Everybody Else Has Been Before’" (Stefans).

I
did a survey amongst people who are impaired themselves and people
who have impaired family members or

medicalprofessionals who work with impaired individuals. The answers
that I received were amazing. One mother to a

child
withFG syndrome, “an X-linked genetic
syndrome, believed to affect both boys and girls; which causes a
variety of

physicalanomalies, developmental delays, and special health needs”,
got right to the heart of what I feel is the way medical

professionals
treat the impaired (FG Syndrome Family Alliance, Inc.). She stated
“the criteria are not by me, but by

medicine… cannot speak, cannot write, cannot dance, cannot follow a
typical school program… I am really fed up with all

this
cannot, because he can do a lot of
things and he [fought very hard] to reach each of them, first of all
breathing…”

(Anonymous
Parent). Cannot and will not are words that, in my opinion, are
overused in the medical profession. Certainly

there
are tasks that each person is unable to do, but most individuals do
not focus on their inabilities. Life is not about the

things
we are not able to accomplish, it’s about seizing the moment and
enjoying every little pleasure that each day holds.

Morrow, J. (2000). Making Mortal Decisions at the Beginning of Life:
The Case of Impaired and Imperiled Infants. Journal of the
American Medical Association, 284(9), 1146-1147. Retrieved May
11, 2008. doi:10.1001/‌jama.284.9.1146